February 29, 2012

My own little beta test

Monday we visited with my local Oncologist, Dr. V. M PSA was 1,663, that is down 130 points from the previous month. Although we are not screaming from the rooftops, psychologically, we always feel more positive when we see the PSA moving in a downward direction.

Back in January we discussed with Dr. V the fact my Potassium level was low. This is a known side effect from my current long term diarrhea issue. While I was someone who used to eat at least one banana a day, with my current appetite, bananas are off the menu. We have tried coconut water and have now added a prescription Potassium pill to the regime and will test again next month. Just another side effect to add to the list.

Additionally, I received my usual monthly shots of Xgeva (bone strengthener) and Firmagon (testosterone suppressant).With so many variables going on with my case, sometimes it’s hard to track down the cause or correlation of certain side effects. The past two plus weeks I have been relatively pain free. I have not had any Advil and I stopped having to sleep on a heating pad at night. This was not true for the ten days to fourteen days that followed my last shots of Xgeva and Firmagon.

Where I am going with this is I believe that I have figured out the pattern. Starting a few days after receiving these two shots, I begin to have pain. It may start in my shoulders, hips, legs, middle or lower back, but it never starts in the same place. It usual moves around every day or two and like I said above, it will last around ten days. I treat it with Advil every twelve hours or so and sleeping on a heating pad helps considerably. The pain ends rather abruptly, and the second two week period will be closer to normal ~ free of bone pain.

This is all just a theory right now, but over the next few days you can bet I will be very in tune with each little ache and pain.
After a very mild winter, spring is right around the corner! Our tulips and hyacinth have popped out of the ground. I cannot wait for warmer days. Mary and I went for a walk around the neighborhood on Sunday. It felt great to get out and enjoy the fresh air. This this is something we really plan to continue.

February 23, 2012

The elephant in the room

Perhaps the worst of the current side effects I am dealing with is diarrhea. Admittedly a subject no one likes to talk about and I'm sure most of you don't want to read about.

I've been dealing with this for almost two months. Like the other symptoms (fatigue, nausea and loss of appetite), this comes and goes each week. I am never 'regular' but have days where I am close to it. However, far out weighing that are days like today where my stomach rumbles all day, and the result is not fun.

It's a subject I have debated sharing and decided that since I share nearly everything else here, I'd share this as well. It's really draining me and has got to be the main reason for the weight loss. Week after week of this is becoming grueling. I think I am more aware of the overall impact over the past two weeks because the other symptoms have otherwise been much better. Less fatigue, I gained a few pounds and am eating better. Only slightly, but a little better. These changes have allowed me to go in the office for over a week straight and counting.

Now, if I could just get this other problem under control, life would be grand.

February 13, 2012

Way back when

Last week was the anniversary of my original biopsy. While I don’t remember much of the actual procedure, I do remember having to wait a week before I got a call back from the doctor. February 11, 2005 was the day that confirmed I had ‘it’. Though the bone and CT scan that would take place the next week confirmed the extent of the spread, the biopsy was the real start of the horror.
I know I over use this expression, but so much has happened, so much has changed. One thing that hasn't changed since then was a statement I wrote back on February 11, 2005, 
‘I don't want to die, this is harder than I even expected, pray for me’.

We settled into a routine years ago, one that provides enough comfort for us to function on a daily basis. It accounts for the peaks and valleys between doctors’ appointments and the other typical things that go on in a family. Last week was slightly better when it comes to the side effects, but I still struggle. There’s plenty of fight left in me all these years later. The bottom line however is I’m still not ready to die. I feel like I have a lot to do. So the feelings of nausea and fatigue just add to the weight  that I bear on a daily basis, and at times have me wondering how much more can I do?

February 06, 2012

An update on 'the Buddy System'

As a follow up to the article that was published last June, the editors of 435 South Magazine asked John and I to film a little chat session that they plan to use on their website.

This was filmed sometime last September. It was completely unrehearsed and our one and only take. Let me know you think!

February 02, 2012

7 year itch, of a different type

Today is the 7th anniversary of my blog. Seven years, almost 700 entries later, and I’m still here.
The last line of my first ever post holds more true today than ever:
But I worry about them both emotionally and psychologically. I can't imagine going on without her or him, it saddens me deeply. I pray a lot more than I ever have..... 
Physically, the seven years and eight different types of treatment for this disease have taken their toll. Not being able to play disc golf or even work out gets to me. The lack of both make me feel lethargic at times. I want to do more, but can’t in some cases and shouldn’t in others.

A friend said today, ‘I don’t know how you get through one or two of the side effects, and you’re dealing with all four’. I told Mary the other night that I am so sick of it (the side effects). Just like always though. I trudge along and just keep praying that the reduced dosage, or one of the new meds, or a combination of the two will end at least one of the side effects. That alone would be a huge burden lifted from my shoulders.

You know the saying “If I could go back and do “x” over again, I wouldn’t change a thing…..” in this case I’m calling BS early and often. I’d change most of the last ten years if I knew it wouldn’t lead me here, now. At times it just sucks, this is one of those times.
Though it started this way, this post isn’t going to be 100% about me being sorry for myself. There are so many other good things in life that I celebrate on a daily basis. I have a wife and son that I love dearly. I have family and friends that remain close and are so very important to me. I live in a world so full of hope and possibilities I have to stop and appreciate that fact from time to time.

Novena to Saint Peregrine
Oh great Saint Peregrine, you who have been called "The Mighty" and "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you. For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favored with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of these sick persons whom we entrust to you.

Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy. Amen.